Talking with Your Child’s Palliative Care Team

It is important for patients and families to have clear, open, and ongoing communication with their palliative care team. This helps everyone work together to make each day the best it can possibly be.

Early conversations should:

• Establish goals for treatment 
• Clarify expectations
• Identify needs
• Understand family values and priorities

Families should regularly discuss these aims with their palliative care team. These things may change over time.

Talking to children about palliative care

Palliative care gives children more power over their illness and control over how they live their daily lives. Talk to your child about their needs. These might be things like getting rid of the itch of a rash, finding ways to spend more time with friends, or managing pain.

Some children may think that pain and side effects are just part of treatment and that nothing can be done to help. Other children may be embarrassed to share their concerns. Still others may not want to upset family members.

Family caregivers play a key role in talking with the palliative care team. Families can keep a record of the child’s side effects and other concerns. They can share these notes with the palliative care team. If communication between parent and child is difficult at any point, the palliative care provider can help.

How to improve communication between family caregivers and the palliative care team

Caregivers and other family members have complex needs and emotions when a loved one is ill. The palliative care team can help families navigate the health care system, make care plans, and manage daily concerns.

The palliative care team communicates closely with the family and health care providers. They can help parents weigh the pros and cons of complex decisions. They can help make sure that decisions honor the family’s values and beliefs.

A good relationship with the palliative care team helps families to ask important questions. In pediatric cancer, a family’s questions might include:

• We don’t know if we are making the right decisions for our child’s care and it weighs on us. How can you help?
• Should we send our child to school during chemotherapy treatments?
• Can you help us understand this information and how it affects treatment plans?
• From your point of view as a health care provider, what concerns you most at this time?
• If cure isn’t possible, can you help us set end-of-life care goals and communicate those to the full care team? What should we tell our child?
• I want to take my child home. What would that look like? How can you help?

Tips to help families communicate with their palliative care teams

• Discuss things your child would like to be able to do, symptom control, pain relief, and ways to manage fears and uncertainty.
  
• Share important family values and religious beliefs. Talk about how they might influence care and treatment decisions.
• Tell your palliative care team how you prefer them to give you information. Let the team know what is helpful or not helpful when getting news about your child. 
• Discuss how to share information with your child in age-appropriate ways. 
• Talk about ways you and your child can share in planning and making decisions.
• Let the team know if there is confusion or disagreement among family members about plans or treatment goals. This is common. The palliative care team can help address concerns and explain things that are confusing.
• Keep the team informed of changes in your life or the lives of family members.
• Ask about complementary and/or integrative therapies you might be interested in trying.
• Be open to talking about future planning. Transitions of care—even those that are positive—can be stressful. Knowing what might be next and taking steps to prepare can reduce anxiety and increase your sense of control.

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